Monday, November 19, 2012

Why Must Being Sick Be Such Hard Work?

Being sick sucks.

Of course, this notion is self-evident. Nobody in their right mind wants to be sick. For those who are otherwise completely healthy, even illnesses as benign as the common head cold bring with them a blanket of misery. That misery is multiplied exponentially when the disease you’re forced to deal with isn’t of the temporary variety, but instead is one that sticks around and steadily gets worse. Chronic and progressive disabling illnesses, such as multiple sclerosis, are especially cruel, as they wreak havoc not only on their victims’ bodies but on every aspect of their lives as well. As the disease progresses, hardship piles upon hardship, until accomplishing once simple tasks become daunting challenges requiring grit, determination, and sheer force of will. Putting on a pair of pants turns into an exercise in ingenuity and physical stamina; taking a shower metamorphoses into a death-defying feat. As the body becomes more and more rebellious, new methods of accomplishing old tasks must be devised, or else those old tasks must be dropped from the patient’s dwindling repertoire of the tightly entwined activities that represent normalcy and independence. Realizing that a button-down shirt has become a puzzle too complex to solve can really ruin one’s day.

Given the challenges inherent in grappling with a crippling illness, it would seem only fair that somehow the rest of the world would get with the program, and endeavor to make the life of sick people as easy as possible. Unfortunately, this just isn’t the case. On top of having to deal with all of the physical obstacles and frustrations of feeling lousy, and having to work around bodies increasingly on the fritz, chronically ill patients (or at least this chronically ill patient) are often met with a stupefying array of incompetence, insensitivity, and needless impediments, often personified by the healthcare establishment that is supposed to exist to help them. From the Byzantine bureaucratic bullshit of insurance companies to the sometimes mind-boggling incompetence of medical office staff, patients are often faced with uphill battles that can make getting proper care and needed services disheartening and daunting experiences, the equivalent of a particularly odious full-time job. Nevermind the innumerable frustrations of being disabled in an able world, attempting to navigate the medical landscape can drive one absolutely bonkers.

Back when I first came to grips with the fact that I did need a wheelchair, a notion which grew roots only after a heavyweight bout of denial, I had the not so great fortune to experience the exquisite pleasures of dealing with insurance company automatons, the folks at the other end of the line who excel at sounding entirely reasonable while spouting a line of crap longer than New York City sewer system. The insurance company brain trust decided that the perfect chair for me was one designed for indoor use only, which was completely ill-suited for life in the big city. This was at a point in my illness when I could still precariously hobble around my apartment, and the point of my getting a chair at that precise juncture was to allow me access to the world outside of my apartment door. Inasmuch as that world is smack dab in the middle of one of the busiest cities in the world, I needed a chair that was rugged, had long-lived batteries, and was relatively speedy, lest I get shmushed in the middle of trying to cross Broadway. Okay, I’ll admit that I also wanted a really fast chair because I thought having speedy wheels would be fun (I was correct), but getting around New York City does provide a need for speed. The wheelchair vendor that the insurance company referred me to apparently couldn’t give a damn about my real-life requirements, and insisted on trying to sell me chairs that were completely ill-suited for the task at hand, but were of the type preapproved by my insurance company. In other words, easy money for the wheelchair vendor.

The more I insisted on getting a chair I could actually use, the more the insurance company insisted that I was being unreasonable, and I was soon thrust into the company’s “appeals process”. Well, there was nothing appealing about it. Obviously designed to simply wear a patient down by attrition, the process was convoluted and nonsensical, as each appeal was decided upon by yet another layer of insurance company bureaucrats, thereby almost ensuring a continual string of denials. The entire exercise took on an air of the surreal, as I found myself vehemently arguing for a contraption the idea of which horrified me to no end. And I mean arguing in a very literal sense; phone clenched in my fist as I screamed myself hoarse trying to get my point across. As I generally am not a very confrontational person, it takes a lot to get me to the point of screaming, but the wheelchair madness got to where I would become absolutely apoplectic upon just seeing the name of the insurance company on my caller ID, worked into a lather before even answering the phone. After a full six months, and with the help of my neuro’s social work staff and photos documenting the cracked pavement, construction sites, eight lanes of traffic, and other realities of my urban environment, I was shocked with a phone call telling me that the insurance gods were sated by my burnt offerings, and that my appeal had been approved. Thus, The Wheelchair Kamikaze was born.

I’ve heard countless similar stories of other patients’ battles with their insurance companies, often times over treatments that the patients themselves were scared to death of receiving. Many patients simply give up, something I’m sure the insurance companies count on. They probably have charts and tables accurately predicting just how much corporate cat herding the typical patient will put up with before crying “uncle”. These patients are sick people, dammit, trying to feel better or make their lives easier. Instead of being treated as such, too often it seems the patient is treated as an adversary. Meanwhile, through all of the pleading, arguing, and appeals, the disease continues its relentless march, only heightening a patient’s sense of desperation. I believe this kind of treatment of chronically ill patients falls into the category of cruel and unusual punishment.

It’s not only the insurance companies that complicate the world of chronically ill patients. Insensitive doctors and incompetent office staff too often are the source of consternation, and just about every patient I know tells tales of the frustrations and sometimes sheer anguish visited upon them by folks whose job it ostensibly is to help them. One of the most common complaints are unreturned phone calls, usually placed when a patient experiences a disturbing new symptom or has a serious question about their condition. Let’s face it, not too many people call their doctor to engage in idle chitchat. Yet, getting some doctors and members of their staff to promptly return calls, or even just return them at all, is far too often an exercise in futility. Thankfully, my own primary neurologist’s clinic is an exception to the rule. The office runs a “nurse’s helpline”, on which I can leave a message that is invariably responded to that very same day by an intelligent and empathetic healthcare professional. Unfortunately, I can’t say the same of the constellation of other physicians with whom my condition has forced me to get acquainted, many of whose offices are Bermuda Triangles for phone messages left with office staff.

This lack of response puts patients in the uncomfortable position of either making repeated phone calls and risk being placed in the “pain in the ass” file, or just letting their issues go and leaving them unresolved. Worse still are instances when, out of sheer frustration, patients must take the lead in micromanaging their own care, in effect doing the job of office staffers for them. In the last six months I’ve found myself having to call hospital radiology departments to get the info needed to schedule tests ordered by one specialist or another, and have even had to call medical records departments in order to get test results sent to the ordering physicians, all tasks that should have been handled by the physician’s office staff. If I had waited for the staffers to handle things themselves, though, I fear I would still be waiting. I understand that such staffers are under constant barrage by needy patients, each of whom thinks their problem should take precedence over all others. The stress of dealing with seriously ill people day in and day out must certainly take its toll, but that’s no excuse for people simply not doing their jobs.

At the top of the frustration food chain are physicians themselves.Most are indeed outstanding individuals who take the time to get to know their patients and show a true interest in them as complex emotional beings, and not just broken bodies on which to ply their trade. Others, though, while clinically proficient, are seriously deficient when it comes to compassion and the art of listening. Neurologist horror stories litter Internet MS forums and chat rooms, tales of doctors who seem to place their own interests over those of the patients they treat, brushing off patient concerns with condescension and disregard, often acting as if they are doing the patient a favor by examining and treating them. This can leave patients more befuddled after their appointments than before, a situation that simply should not be. Yes, doctors are only human, and perhaps some patients expect too much of them, but at the end of the day it is the patient who is left alone to navigate the frightening world of chronic illness, a fact that should be at the forefront of every physician’s mind and personal code of conduct.

Yes, being sick can be very hard work. My MS friends tell story after story of almost unbelievable travails within the labyrinth that is modern medicine. Although different countries have different medical systems, it seems every patient, no matter where they live, has their own tale of battling the medical powers that be. Not every physician’s office is dysfunctional, not every doctor is an egotistical ass, and not every medical staff member is incompetent, but there are just enough that are to make being sick sickening. When I “retired” from my career six years ago I had no idea that a new occupation awaited me. Far too often, being sick is a full-time job.

The irony is how many with MS develop some cognitive impairment. It is then left to them to navigate the labyrinth of constantly changing needs and requirements of the medical complex. I fret about this even knowing my wife is a nurse and we have some experience dealing with the system both for our own healthcare and our medically fragile foster and adopted kids.

For me the hardest part is there is no one prime cause for me to highlight saying, "If only we could fix this part all would be well." The system is comprised of parts separated from the whole of the process. It fits the very definition of a complex system. So like fixing the tangled slinky with every healthcare need, a patient or their advocate must resign themself to starting at one end and winding one's way through the entirety of the slinky to resolve the kinks. The choice is that or accept the slinky will no longer walk down the stairs.

Very well put. The idea of patients with cognitive difficulties trying to unravel the slinky is indeed disturbing.

Insurance companies are one thing, as it's in their best interest to keep patients confused and reticent to deal with them, but doctors and their staffs should be more focused on making the patient experience as easy as possible. Unfortunately, somehow, the patient often seems to be left completely out of the equation…

This hits home today! I've been on the phone at least three times a day for the last week trying to get my prescriptions and new therapy in-line. My latest irritant - every phone call they want to end with putting you online with a nurse who asks silly questions. I've had MS for 10 years. I have a PhD...please don't talk to me like this! Then when I try to hurry them off the phone more than one suggested I was in denial. Denial! A two minute phone call and they are playing Dr. Phil!

It is incredible how condescending people can be without having any real knowledge of who you are or what your history is. I've had good and bad experiences with the nurses at work for the insurance companies. When I have a good one, I make sure to get there name and direct line so that I can deal with them again in the future. Of course, the best laid plans of mice and men…

my mum who is 86 with just a walking disability and slight memory loss says the same about the helpers in the old folk home: they talk to me as if I were a retarded child who needs to be taught life, they shout as if I were deaf..

Thank you Mark for telling it like it really is, reading your posts are a catharsis. They explain how I feel/felt, what my fears(living my nightmare) are with this seemingly endless progression. Thank you and please keep writing.

Again, well said Marc. I am currently care giver for my husband, and dealing with the insurance companies has me in a knot. I AM THE ONE WITH MS, and the cognitive problems I have - trying to get my point across to the idiots who are the case managers, benefit managers, et al has terrified me into NOT CALLING. I need help with this but they are useless. The fact that my husband will be better, and we can just pray that my life will get easier AFTER he recovers, is that silly light at the end of the tunnel - if we are not sent to collections first...

Yes. Yes. And Yes. After dealing with social security disability and all *that* complication...I can't do anymore. I have just given up and given up on reimbursement. I bought my own walker. I bought my own safety handles for the bathtub. I bought my own chair for the shower. I bought my own rowing machine for exercise.When the full-time wheelchair time arrives (and this appears inevitable), I will pay for it with the money I am saving from disability. I go nowhere, I do nothing, with this in mind; this expense is coming. There is no one to battle for me and the stress, ironically, will make the MS worse (so it is said). I give up! I just want this sad, little corner of life that I have left to be peaceful.Wonderful writing, as usual. I give thanks, this Thanksgiving, for you and your constant battling for information on our our (my!) behalf.

I quit my work looking after a mad boss as the frustration of being in a position prohibiting me to fight back was too much for my poor nerves. At last, I could be at peace and would have more time to take care of body and PPMS. I found that dealing with the French medical system (public, very flawed too)was in the same vein of aggravation and another bad job to do. So I stopped trying to involve even my GP and associations in my case. I stopped running around in circles to see the so-called knowledgeable. I try to protect what is left of my damaged nervous system, try to eat well, do a little this, a little that, in peace. As there is nothing to do for PPMS, might as well relax.

Sue,Why not just read what I want you to, as I know your World I invite you into mine.19 Years old, very successfully achieved my Master Degree in Travel and World Historic Tourism. I travelled the world. I stopped in Turkey in 1999, ready to jump in my unfamiliar surroundings when the whole World (in my head) was shaking for long enough to throw me off the bed, the Patio Doors were smashed as I scramble out of a horrendous visual manifestation of the 6.4 EQ. I was in the epi centre and so were the screaming locals that call this place home. Bones snapping from balcanony jumps was yes a saviour yet agonising wait for help. Dark as this was night, yet DARK, well I've painted the picture. I'm 32 now, I have 2 boys and RPMS. We all share symptoms. It's my choking that terrifies me, first I can't swallow then Choak and fit. Waking in A&E is a strangely good feeling.Loosing my unborn child and blaming Medication for my MS was my breakdown. Kill me I agonised with myself. Then I saw my 2 boys, still here, still growing and they never want or ask for anything. They are so brilliant, they save my life by dialling 999. Yes, I have free medical care. NOTHING HAS EVER WORKED AND BASICALLY MADE ME EVEN MORE UNWELL. This is MS. I'm 32, my husband left me, I have 2 boys aged 7 & 5. Will they get a life???? Too damn right because I did experience great healthy times that I embrace today as at least I've done a lot, even achieved a job seen 1 in a million. Although MS is a stupid illness with patience still is stupid. Turkey and her tremendous loss of life, buildings, schools bla bla...... After repairing what little they had, still will never be in my life history of great times that I did take for granted.I go on, I know, yet now I feel I know very little about your World. Love Sarah

The travails of battling with a private medical system chill me as I'm sure you can imagine. All is not perfect to be sure but the problems I have to grapple with (Secondary Progressive - diagnosed 1996) are way further down the track. So much of what you describe just... works.

Being "out and about" certainly needs a power chair. The big problem that will in the end have consumed almost a year is to travel in a vehicle with the power chair. My wife is my carer and will drive which makes the problem a little easier to solve.

You hit the nail on the head when you mentioned "compassion." For the most part, it has vanished from medical providers and especially from their staff members. How this came about, I'm not sure, I just know it's a problem. Thanks for a great article!

Hi MarcI am reading this post again and want to share my latest reaction to this frustration. You use the expression: "I believe this kind of treatment of chronically ill patients falls into the category of cruel and unusual punishment." The expression: "breach of contract" is what I think when I read this post. Deny, deny, deny right up to the limit of contractual breach and then the benefit is provided.

Since I'm the boss, I don't talk about MS at work because I don't want to invite people into my personal hell. I no longer can walk and my dominant hand is useless, so everyone knows my status.

Which leads me to my bitch. When my colleagues start talking to me about their sore backs, stuffy noses, or general malaise, I. want. to. scream. I want to shake them and ask them if they even see the person they are talking to. Instead, I suggest they go home if they're not feeling well, take some Advil, and crawl into bed. Since I don't talk about how shitty I feel every minute of every day, it's assumed I'm fine and can serve as their rock and their sounding board.

Your statement about "being sick can be very hard work" really struck a chord with me. It is a full-time job on top of my full-time job. And then add being a compassionate ear to everyone else's minor problems to the heap and it's more than I can handle some days. I am so exhausted but the thought of not working frightens me to no end, so I trudge on.

Did I mention I often use my lunch hours to schedule therapies, appointments, and sort out medical bills?? I'm reaching the end of my rope. Thanks for the description of how I feel. I just might copy it and put it in the lounge.

great post... have just discovered your blog about MS. Interesting as a fellow MS'er to read others journeys... it is sure a frustrating one at times! I have a funny post just today avtually about MS - you might like to visit? http://brightwingsofsummer.blogspot.com.au/2012/11/whats-for-breakfast-watercolour-hibiscus.html

Thanks Mark - great post and I've been reading you, on and off, for quite some time. I'll play a little bit of a bully and devil's advocate. I have MS and it changed my life considerably. I was a marathoner and otherwise extremely active, and now I couldn't run across the street to save my life (literally). That said, I'm not (yet) in a wheelchair and am still working.

It seems to me that acting like a "sick" person and referring to yourself as a "sick" person leads to you being treated like a "sick" person. That's not to say that the system is fair or works, but the reality is that these people you're talking to deal with impatient, entitled people all day. Be the exception, not the rule, and good things (or at least better things) may start to come your way. I know that sound idealistic, coming from someone that hasn't yet had to fight with insurance companies about equipment, and I'm am the first to say you need to be your own advocate, but it just makes better business sense, and it can be a self-fulfilling prophecy if you're not careful.

That said, I do agree and think the culture is to shaft those of us who are more in need. thanks for the post!Jim

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...